Wednesday, September 19, 2007

Incision-looking time, lost my marbles and a little Peanut

WEDNESDAY, SEPTEMBER 19, 2007 05:50 PM, EDTOkay, there you have it. Incision that you can't see unless you zoom in and also a good look at Brianna's G-tube. I know we have been known to call it a "feeding" tube but to me that just doesn't sound good. G-tube sounds so much better. Doesn't she look just wonderful? and it's only been three weeks.I have to tell you when Jerry read one of my last updates about things being so good, he asked me if I had lost my marbles. Things are good but we are incredibly tired. Brianna is eating every three hours(around the clock), it takes times to get the feeding pump ready, hook her up, set the timer to go off in one hour, get back up, empty, rinse out the pump and hope to goodness she doesn't get gas, or a tummy ache. Speaking about gas, it's rather interesting, all we do is uncork the end of the G-tube and it will "burp" out.So, at night we only get two hours of sleep at a time. We try to take turns but sometimes you can't help but wake up and hear what's going on.I told Jerry that I didn't think people wanted to hear us whine but the truth is, it seems like everyone really wants to know what is going on so, there you have it. I hope it doesn't sound like we're whining because really we're not. We are very happy to have our little peanut here with us.

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Our Family Christmas 2008

Photo by Martha Bravo

Definition of Trisomy 18

Edwards Syndrome : Edwards Syndrome (Trisomy 18) is a chromosomal abnormality where there is an extra chromosome present in every cell of the body. This is an example of where “the more the merrier” is not true. This extra chromosome means that every cell has extra information encoded into it. The extra information causes confusion in the way that the cells are formed and results in the potential malformation of all of the body systems. Sadly, this condition is considered "not compatible with life". Just like with Down's Syndrome (Trisomy 21), there is a wide range of how this condition will play out (what the doctor's will refer to as your child's phenotype). Unfortunately because there is more information encoded on the 18th chromosome, the severity of this condition is greater than that of Down's Syndrome. Current studies show that while 1:1500 children will be diagnosed prenatally with trisomy 18, only half that number (or 1:3000) will be born alive at full term. Of those who survive to birth, only half will make it to two months of age, and only 10% will survive to their first birthday. Children who live can be an important part of their family and community, but are profoundly developmentally delayed.

But oh, how we love these special little babies. When Brianna was born we were told she would probably leave this earth within 24 hours...but look at her now. 24 months old, healthy, adorable and amazing. God has been so good. Brenda

Bri's Medical Condition

Brianna was full-term born on April 12, 2007, weighing 5 lb 18 oz and 18" long. Her Apgar scores at birth were 8 and 9. Approximately 15 hours after her birth we were advised of the tentative Trisomy 18 diagnosis.

Immediate health issues had to do with her heart: Mainly, a VSD (Ventricular Septal Defect); PDA (Patent Ductus Arteriosus) ; and a PFO.

Open Heart Surgery at 4 months and

G-tube placement before we came home.

Eye surgery in Spring of '08 to correct cross-eyes.

Tubes placed in ears in Fall of '08 hoping to quash the numerous ear infections.

Scan of abdominal section in Dec. '08. Everthing appears normal.

Brianna takes formula by g-tube but eats baby food by mouth. She can hear, see, is rolling over, sitting up, trying to crawl, playing with toys, says "da da"; "do it, do it, do it" and various other sounds. She is the happiest child we have ever known.